Christmas Eve 2017

Business end of the blog first.

Last weeks chemo,  despite a small hiccup went ok, I did have concerns that the newly placed port wouldn't work. We started off really well, the needle went into the port easily and relatively painlessly(!) The saline was delivered smoothly, but when the Oncology nurse tried to extract some blood out, it just didn't work.

It's ok, we tried again, removed the needle, put a fresh one in and tried again, still not working. Confirmation was given that it would be fine to use the port for the chemo, regardless if we could get a blood sample or not.

Another new needle in and tried a third time, still no way was I giving up any blood, and so it had to be taken the usual way, in the other arm, fair to say by this time I was once again feeling a little queasy!

One of my many 'angel' friends had arrived at the ward and was an excellent distraction, the nurses carried on with the job of hooking me up to my saline/steroid/fluid bags, in preparation for the chemo.

I did have the foolish notion that post chemo I would nip into town to do some Christmas shopping, forgetting that I am usually wiped out! SW wasted no time in taking charge of my shopping list ( and credit card!) and disappearing for an hour into town, returning with a completed list and fortunately my card. She said she enjoyed spending other people's money!!

Jack came into hospital to take me home, a little later than normal 2:45pm, from start to finish seems to take about four to five hours. Amazingingly my bloods seem to be holding their own, quietly pleased that haemoglobin is still a reasonably healthy 10.5, white cell count dropped to 3.2 and platelets a little low at 149 and of course the neutrophils are down to 2.48.

Arriving home to a delivery of a very large homemade lasagna prepared by another 'angel' friend was a real bonus, certainly appreciated by the rest of the family as I often come home and sleep!

As I type the Christmas table is laid in readiness for tomorrow, the turkey is in the fridge and there are presents under the tree.. I am so lucky to have such good friends and family around me, we all know that Christmas can be a sad and lonely time for many.

A few photos from this week's dog walks.

Finally, the dogs are so excited for Christmas, they asked me if they could wear their headbands....

See their happy faces? Or maybe not.......
 

Wishing you all a very Happy Christmas! xxxx

Sunday 17th December

I am pleased to say that things have not been too bad at all, the 'port' seems to have settled down a lot, and hasn't been as sore as I first thought.
I was back to the hospital again on Thursday to have the dressing cleaned and changed and it all looked very good- actually that's only hearsay, I didn't look myself, no more fainting episodes for me...
Oh, did I mention that last weeks chemo didn't go quite as smoothly as the first lot?

I started off ok, but the vein in my hand that they cannulated was very small, and it decided  to play up a bit. So I had to have blood taken from the other arm at the same time, this was all fine until in trying to get the larger needle to 'work' it was wriggled around, and then wriggled some more.

I felt a bit hot, and then Bex walked in, I looked across at her as she was giving me a "what's the matter" face, and I mouthed back, "get me a sick bowl!" She relayed my request to the lovely nurses, who quickly obliged, however that feeling passed , but was replaced with me saying in a voice that didn't sound quite like me " and now I am going to faint!".

What a drama queen! The nurses sprung into action, tipping the chair back and slapping on the  blood pressure monitor etc. Within twenty minutes normal service had been resumed and I felt fine. Just think it was a combination of drinking a hot drink, feeling too warm, and lots of needle activity!

I am a little worried that tomorrow's port access will not go smoothly, or worse it won't work, but there's no point worrying.

Good news is I get a week off over Christmas, hurrah. Also it seems that the excess fluid I had in my legs has improved significantly, still there but a lot less, which makes life more comfortable.

Wednesday sees the arrival of AB, just in time to get the jobs done before Christmas day, once again a long list has been written, I think I'll let her off cleaning out the wheelie bin this year.....but the guttering does need clearing, I'm sure we've got a long enough ladder....

Its been a bit sad not being able to do any activities other than dog walking, although I can hardly say my energy levels have been high. We had lovely sunshine on Saturday so a walk out west with friends, and then gardening most of the afternoon was perfect.

Seeing good friends this morning was also a real treat, albeit for a short time.

 A little blast from the past, who are these two?

Wednesday 13th December

The 13th unlucky for some, but it wasn't a friday.... I tried not to think of the date when I was lying on the operating table in the General Hospital this morning.

I have had a Portacath fitted which in the long run will save the nurses in oncology the hassle of finding suitable veins to cannulate, and me the discomfort of them probing!

By the way, if anyone tells you that having a 'port' fitted is fine they're lying. It was awful! Or maybe I'm just no good at having a local anesthetic and being cut, poked, prodded and pulled....

A portacath is an implanted venous access device for patients who need frequent or continuous administration of chemotherapy. Drugs used for chemotherapy are often toxic, and can damage skin, muscle tissue, and sometimes veins.

An incision of approximately 3cm is made in skin on the front of the chest and a “pocket” is created under the skin for the port. Local anaesthetic is administered to the side of the neck and using ultrasound guidance, access is gained to the vein in the neck, via a small (5mm) incision.

Anyway its done now, and Its for the best I know, back into hospital tomorrow afternoon for a dressing change. That's three visits this week, quite enough for anyone. 

Let's change the subject. 

So there was Steve a few Sunday's ago at Chapel, doing his best to play the hymns on the organ to the standard that was expected by the parishioners, when suddenly the notes started playing themselves.... he took his hands off the keys and the organ just carried on producing random music. 

Trying to stop it he pressed various buttons, but nothing worked, so in desperation he turned it off, but still it carried on. Meanwhile the congregation were sitting there in stunned silence, watching a desperately reddening man battle with the phantom playing instrument.

Finally he managed to stop the weird noises emanating from the sickly organ, and giving up on it, told the watchful audience that he would try the piano instead. 

Collecting his music and settling himself down he continued to  play the hymn he had started, but it wasn't until he began the third verse that he realised the congregation had stopped singing- bit of a mix-up with the verses I believe. 

It certainly led to some interesting discussion over the coffee and biscuits. 

Sorry, having to finish now as the anaesthetic  is gradually wearing off and painkillers are required!

Thursday 7th December

A long overdue update for those friends and family that are not on Facebook. 

Bex is doing really well, she is staying positive and doing all that is asked of her, she hasn't found any of it easy, but we admire her spirit and determination that this time she really will change her life around. 

She is growing in confidence and tackling many of her fears and anxieties head on, yes, we have days that life is a struggle, but these will get easier.

The whole family and her work colleagues have been supportive, and we feel truly blessed that so many friends have put in offers of help, we thank you all.

So, Monday morning saw me rock up at the Oncology unit actually on time (!) Thats a first, it was like a meeting of old friends. All the same lovely smiling faces and big hugs all round.

Then of course down to business, I had the cannula fitted and started with a saline drip, then a litre of fluid, and after the cisplatin (chemo drug) but only a low dose. This was followed by some more fluid. 

The whole process took about six hours, and fortunately to save parking the car Jack and Steph had dropped me in, and so Dan arrived in the afternoon to bring me home. 

I felt ok, just a little spaced out, this was even more apparent as on our way home we stopped at the shop to buy a few groceries, whilst at the till I asked for a "hundred pay cards" when in actual fact I wanted a book of an hour paycards. No comment. 

I did end up sofa surfing for a few hours, and then felt like making some soup, which I did- and put it in the aga........Tuesday morning when i was driving to yoga at 9:45am I remembered about it.....

Fair to say chemo brain has set in early. 

The first few days post chemo I've had 'chemo cheeks' looks a little like sunburn, but no problem. By Tuesday evening my legs were swollen with what I presume is excess lymph fluid, a feeling i remember well from the last operation two years ago, decidedly uncomfortable. 

I played racquetball on Wednesday morning, they didn't seem too bad, but got progressively worse as the day went on, felt like 'michelin man legs'. I did just ring Oncology and mention it, they said to come in for a blood test this morning, I said I was going to play badminton as sure that would help! 

It wasnt easy lugging what felt like an extra kilo of water around the court in my legs, and it's fair to say my badminton prowess was appalling, its not good at the best of times, reckon a slug would have been faster, but at least I could say Thank You to the club for buying me flowers, and I had a few laughs along the way, medicine in itself.

Bex and I visited the hospital together together to have our respective blood tests, and then I went to a pilates class, which I really enjoyed. Havent managed to walk the dogs at all today as needed to rest instead. 

Trying to get the balance right, (that'll be a first)- but I get firmly put in my place by one of the boys If they think I'm doing too much!

Guess who's in this month's gallery magazine? Steph and Rosie!

Jess by St Catherine's reservoir 

 Ladies night out....

I am sorry that there hasn't been a more recent posting, but the HUGE disruption that my sister caused with her four day stay put a spanner in the works so to speak!

It has been so lovely having her here, no, seriously I really mean it, even though she failed miserably on the 'jobs' front. Apparently cleaning isn't 'her thing', we never got round to making the Christmas cake, I had to do the ironing, and on the day she left we realised we'd never even managed to plant the spring bulbs! And she calls herself a gardener.

Mind you she has completely destroyed the hebe bushes that were growing rampantly in the garden, pruned them to within an inch of their lives. So disgusted was I with her refusal to do any chores I sent her out at 7:30am to get on with the task, ( it wasn't raining then).

That was another bone of contention , the weather, just because we had a few odd showers of rain, the earache I had with how lovely and sunny it was "up north". Bang out of order.

Don't worry though I got my own back, made her go to my aerobics class with the twins on Sunday morning- she had to borrow my clothes which in itself was highly amusing , and scrounged a pair of trainers off the girls.

All was going swimmingly until as we were jogging around in a circle and touching the floor with either left or right hand alternately, I glanced across and saw her going at a fair pace and stumble just avoiding a very nasty 'face plant'.

She hoped I hadn't noticed.

Fortunately she didn't fall on her face, and regained her composure quite quickly, unlike me who took a few minutes of smirking.

We were spoiled by SW buying us an overnight stay at a rather nice hotel out west, where we enjoyed the swimming/sauna/ steam as well as a lovely breakfast the next morning.

Wanting to keep Sal occupied until the last minute I suggested we went to racquetball Wednesday morning, she of course has never played ( it's a bit like squash, and she used to play that). She managed the warm up without visiting the floor face down and we played a match, that girl has biceps of steel, it's all that gardening she does. Anyway I was involved in another match when I discovered that on attempting to get to a shot had crashed into the wall and gone over on her ankle.

Had visions of going to A&E , with only three hours before her flight was due to leave. Once again she was lucky and didn't seem to have done anything too bad, but wisely retired gracefully.

Apparently the flight was on time and uneventful but during the car journey home the ankle started swelling, ice packs and painkillers required!!


All in all the four days went far too fast, but we did have such a good time ( or was that just me?). Not sure Sal had the restful short 'holiday' break she was looking forward too, returning battered and bruised !!

Bex is doing extremely well, she has made real progress with her weight gain, and is complying with all that's asked of her, she is taking the lead on many decisions and being steered into making the choices that are right for her.
( it's starting to sound like a school report!)

It's not plain sailing though and there are always good days and bad days, or just good mornings and not so good afternoons, she tires easily and has to rest lots, but it's all positive and she moving in the right direction.

Thank you to everyone for all their good wishes and messages of encouragement .

I had my pre chemo check up and chat on Wednesday , it got to a certain point and I felt like saying, stop, don't tell me anything else, it's far too depressing!! Bloods were taken, and all things being equal I start the first ( small ) dose on Monday at 9 ish. It'll take 4-5 hours as lots and lots of fluid are put through at the same time.
It's ok as they will position me near the toilet..... never mind that, four kids and two major abdominal operations I shall need to be IN the toilet.

It's not so much having the chemo, ( I've got the t-shirt- well actually two) it's the fact that my white cells are so low already, it does mean that I'm a bit of a guniea-pig, and the danger is the chemo knocks out all cells, good and bad, and I really don't have that many good ones to use to pick myself up.

Yes, I'm anxious, yes I'm annoyed at 'losing' out a day of the week sat in hospital ( it's ok , my sister says it would have been worse in the summer - she's right of course ) but I HAVE NO CHOICE! At least they feel that it's worth a pop, it's when there is nothing more they can do that I REALLY need to worry. Until then, ( or actually even after), I shall keep my pecker up.....

Finally thanks to the Merton girls for a lovely meal and night out, even if I shot off home early, it was nice to see everyone dressed in their glad rags!







- Posted using BlogPress from my iPad

December 2017

December! How did that happen?

Photos and then posting to follow.....

Steph ready for her training run....

 The aerobic girls....

 Family supper for Pops birthday....

Reliving our childhood......

 My sister and me....

Hospital

That's not really a title more of a location. I'm sat in the waiting room in the phlebotomy clinic, not for me this time but Bex needs twice weekly blood tests.

She came home from hospital on Tuesday after a meeting with the Mental Health team, they were encouraged by how well she had done over the five days. She put on nearly a kilo and managed to cope with the ' alien' environment, ironically one of the biggest struggles was not with the eating regime but the other patients on the ward. Sadly two ladies with dementia were very challenging .

The team felt that the best course of action for Bex was structured, observed meal times, but that she could be at home and just come in three times a day.

Firstly they are concentrating on improving and adding to her diet, eventually all the other anxieties and concerns will be dealt with, but everything is done in stages.

We will be involved in weekly family meetings, helpful to all of us, as none of us have had any real experience with any of this, but thankfully we are all supporting each other.

I'm now siting outside the 'home' in town where Becky has her meals-she has to be here for around an hour for breakfast, lunch and supper, and has been told that as well as absolutely no exercise, it's best not to drive either.

So far her routine seems to be eat, sleep, repeat.

I ( and a growing team of helpers) are doing the running around, dog walking, lifts, food shopping for her and us etc.

She is finding it incredibly hard, both physically and mentally, her body is trying its best to adjust to dealing with far more food than it has done in the last ten years and that's tough.

We all know ( her included) that at last she is getting the help she needs and it's all for the greater good, but that doesn't help the nausea and stomach cramps.

Do not fear though as the flugelhorn, cello playing Calvary in the shape of my sister is arriving tomorrow. She has, I am well informed, a large Mary Poppins bag full of useful things.

All her gardening tools so she can prune, weed and use my new lawn mower..... Yes I have an early Christmas present from my father in law, he heard my cursing whilst using the toy one a few weeks ago and dragged Jack and Steph to a well known hardware store that does 10% discount for the elderly ( he is a Jersey boy) and bought one.

Alas too late he realised he'd been tricked into buying the pair of them lunch too, but as they they have his best interests at heart they used the establishment on the pier at Rozel, so he had some pension money left over.

We won't get much cash out of my sister, she's married to a northerner. They have it tough up there, I told her to bring her swimsuit as the sea is positively balmy, although the endless list of jobs I have lined up for her gives her little time for pleasure activities. ( not that swimming in the sea at this time of year is pleasurable, well only for AH)

I haven't made a Christmas cake yet, so I hope she's bought her chefs hat, plus I've especially left three weeks of ironing , two weeks of washing and the kitchen tiles to scrub.

Shame she's only here until Wednesday .

Now a short piece of info about me. The same day we had a meeting with the MH team at the hospital about Bex, I had a meeting with my consultant for about thirty minutes and then my oncologist.

The most recent CT scan shows that the disease has progressed, and I now have tumours in my chest cavity ( not my lungs thankfully). If we do nothing it's only going to get a whole lot worse.

They spoke about me at great lengths in the MDT meeting, and decided that the ONLY option I have is to go down the chemo route.

This is why I met up with NB the oncologist - we spent about an hour with him ( thanks SW for being there) and ran through what is likely to happen .

On the 29th I have my pre chemo bloods taken and a 'chat', the side effects have been explained , thinning hair, loss of some high notes in hearing, tiredness , fatigue, nausea, neuropathy etc etc.

He feels I will respond well to this drug as I have in the past, the HUGE downside is my suppressed bone marrow, this could give me real trouble as it's already low to start with, and is only going to get knocked down further.

We are starting with the lowest dose possible, the idea being to have it weekly ( it'll take four to five hours to administer and I'm sure I will be closely monitored ) .

Am I scared? You bet I am, I've been on thin ice for a while, and now I feel like I'm on the slippery slope, but listen....... I don't hear any fat lady singing so it's not over yet!


Must just mention when Bex and I left the hospital last week, there was a lot of stuff to pack up, it's amazing what you can accumulate in a short space of time. I had a very small bright red 'wheelie' case as well as lots of carrier bags. The case is quite old and had been used in the young farmers concert a few years back, plus Dan had recently borrowed it for someone.

Unbeknown to me the wheel was loose, a third of the way down the hospital corridor, after it left a long black mark , it fell off.
This left me looking like a "Mr Bean" as I dragged the semi broken case making an unearthly noise the rest of the way past the bay's, into the lift and out of the hospital , very embarrassing but quite funny too.

Lastly, thanks for the cards/ flowers/ and get well wishes for Bex, we are at last to coin my husbands phrase "moving forward". :-)







- Posted using BlogPress from my iPad

Saturday? Sometime in November?

Life's all a bit of a blur, days, times, months are all merging into a swirling maelstrom of confusion.

This blog post is not really about me but our daughter, and for those of my friends and colleagues that don't have FaceBook, a brief update.

Our daughter, Bex, suffers from anxiety issues, and has done for many, many years, over the last few years these have become more pronounced, she also has an eating disorder, again, something she has had for over ten years.

None of these conditions have been helped by my own illness, and as we are very close the impact on her has been huge.

I do not want to write great reams on her past medical history, as that is now behind us, but finally due to her amazing brothers she is now getting the help she needs.

The boys felt that they could not sit back and let their sister fade away before their eyes, and so working together they collated a profile of her personality and concerns, and presented it to her doctor.

All four of them went to the surgery and talked through the family's situation, fortunately the doctor realised the very serious concerns the boys had for their sister and arranged an appointment with the Mental Health team over here.

Bex understands that in order to get her life on track she needs help and support from lots of people, she has tried repeatedly to help herself but always stumbles at the first hurdle.

It is only with a professional team that will work on all areas of her life that she knows will help her make a full recovery.

This will not be easy, we all know that, and it will take all our love and support to help her through.

We also realise there is no 'quick fix' to this problem, and the road ahead will be long and rocky.

Bex is being so incredibly brave and positive, and we are so proud of her, she is strong enough to take on this challenge and win.

All this has happened very suddenly this week, and so far we are only on day two, but I felt I had to put 'pen to paper', partly for me to make sense of it all, but partly to let folks know that I really am, and for the foreseeable future taking "one day at a time".

Thank you x

Wednesday 15th November

Honestly you let your guard down for a few minutes and your whole world goes topsy turvy.

One minute you think you're recovering from a chest/sinus infection the next you are booked in for major investigative tests!

Let me explain, I went into hospital for the chest scan on Friday, didnt take long and was fine. My lovely, lovely consultant was in situ and had a free minute so we looked at results. She compared them to previous CT i had in September. I seem to still have inflammation at top of left lung ( near radiotherapy site, and also mid right lung (?).

They had originally put this down to radiation damage. KG took a full blood count from me and also being concerned about my leg pain felt that an ultrasound to check there was no blood clot was urgently needed. Fortunately no clot was found, although obvious inflamed lymph nodes.

Later that evening KG text to say my Haemoglobin level was 9.3, this would explain the tiredness and breathlessness, plus i guess what ever was happening in my lungs?!

The weekend was pretty rubbish, not helped by the weather, but I was wrecked. Did a lot of resting on the sofa but felt no better for it, and was really light headed on Sunday.

Not able to get/do any exercise, not feeling very well, scared because even walking/talking was a bit of struggle and all of that did nothing for my mental health either.

However Monday morning I felt much brighter, and meeting with friends was a tonic I needed.

Tuesday I went to a yoga class and managed not to faint......bonus!!!

Also went to support my netball team, that was exhausting! I'd never make a coach far too excitable/shouty/anxious! Shame we lost by three goals, but the team played very well.

Today I was so pleased to be able to play some racquetball, its such a good sport, and of course the folks are so lovely, I just pretended I couldn't breathe and they gave me easy shots....


Straight from there I went to the hospital for a very detailed comprehensive CT scan, instead of just scanning my abdomen I had an all over body scan, well nearly, don't think the scanner was quite long enough to do  from the knees down!

I don't know why I keep adding exclamation marks to the end of my sentences, they make it look like it's all a bit of a jolly, and actually it really isnt.

Although I am finishing on a reasonably upbeat note, my marvellous consultant has persuaded the radiologist to 'read' todays scan, and it seems there are only subtle differences, this is better news than I hoped, but no doubt more details in a few days.

Apparently my attempt at putting the link for  Stephs page on here didnt work too well, lets try again.

https://www.justgiving.com/fundraising/stephanie-egre

PS, the dog is recovering well, but it will take a few months to totally heal.

Thursday 9th November

This day five years ago Dan had his graduation in Winchester.... I'd had my first operation in March 2012 and was trying to finish my cycles of chemo, my hair had just started to grow back, as the photos show. It was a happy day, and we were all proud to be there, grandparents included.

Its been quite an eventful few days following on from the fantastic holiday ( seems like a distant memory). Hubby has ended up with a stinky cold, which fortunately his immune system seems to be tackling better than mine ever does.

We've started fundraising for my future daughter-in-law who has managed to secure a place with the UK charity Ovacome and is running in the London Marathon next year. She has to raise at least £2,000 just for starters.

Since my chat with the Marsden I have had nothing but pain from my leg! I think thats somebodys "law". I have at least stopped coughing, but my cardio has only marginally improved. This is worrying, but I do have a chest scan booked for tomorrow afternoon.

We've been to the hospital already this week, one of the family needed a colonoscopy, and as i said to the nurse in all seriousness, "we do need to get to the bottom of this".
I know, I know.

Just as bad as saying my leg is killing me, which actually it may well be, but that's 'black humour' for you.

Talking of humour, I had to take Beanie to the vet this week to spend her Christmas present money on getting her paw pad stitched. No idea how she cut it, but she was very well behaved, that is until she got home, heard her sister going out for a walk and then flew out of the garden and down the meadow trailing a chicken printed crepe bandage and cotton wool behind her.

Back to the vet for another strapping, lasted another 12 hours before it too was hanging off. We decided we would improvise and found some crepe bandage in the cupboard and Dan used his expert first aid skills to cover her paw.

While I was out they had to walk the girls, and decided in their wisdom that they needed to keep the paw dry, so wrapped it in two clean dog poo bags, and a small sandwich bag tied on with string.

They forgot to take any leads and as they had to walk back along the lane they needed one and so  they had to improvise, which meant tying a strip of black silage plastic on Beanie's collar.
You can just imagine what they must have looked like. My poor dog. 

If you're interested in Steph's story and are not on FB, look at the link below.

https://www.justgiving.com/fundraising/stephanie-egre

Wednesday 1st November

First day of the month, first new blog post on my 'new' second hand laptop, first day in about a month I'm NOT coughing!

Thanks to Hospice today I had an amazing relaxation complimentary treatment today, it was wonderful and I felt very good after it, so good in fact I managed to cut the grass when I got home.

Thanks NC for the amusing card with the iceberg and lawnmower, I was smiling about that when I was forcing the toy mower through the knee high 'lawn'.

I had yet another visit to my doctor on Monday, really just to update him on my growing medical history, but also as I still felt bad. However, I'm feeling a bit stronger and fitter today, so despite being issued with yet another course of antibiotics I've decided not to take them!

He also booked me for a chest scan, I'll have to see about that one, no date as yet.

I spoke to the Marsden yesterday and left a message, a doctor called me back today and we chatted about how I've been over the last two weeks.

I said although my groin/leg pain niggled on and off I really only had one bad spell with it during the last fortnight, and I didn't feel it warranted any treatment as such yet.

I sighted a few reasons why we should hold fire with the radiotherapy (excuse the pun).

#1 I've had two bouts of radiotherapy in the last 12 months.
#2 I'm only just recovering from a nasty infection.
#3 Unless I start fairly soon I'll be into Christmas, and the thought of spending the next four/five weeks in London is not appealing.
#4 I want to give tamoxifen a chance to work, I've only been on it three weeks, so wont know if it's being effective until end of December.


She said she'd discuss with Dr AG and get back to me, which she did this afternoon. They seem to think that waiting is fine, and they have booked me into the Marsden for scan and clinic appointment first week of January, unless things drastically change that's the plan so far.


Ok, so thats the information side of the blog...

The rest is going to be HOLIDAY PICS !!!!

Hippos!

Table Mountain

 View from rooftop terrace at hotel in Cape Town.

Boulders Beach.....

Enough!!